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Using Participatory Design to Inform the Connected and Open Research Ethics (CORE) Commons

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Abstract

Mobile health (mHealth) research involving pervasive sensors, mobile apps and other novel data collection tools and methods present new ethical, legal, and social challenges specific to informed consent, data management and bystander rights. To address these challenges, a participatory design approach was deployed whereby stakeholders contributed to the development of a web-based commons to support the mHealth research community including researchers and ethics board members. The CORE (Connected and Open Research Ethics) platform now features a community forum, a resource library and a network of nearly 600 global members. The utility of the participatory design process was evaluated by analyzing activities carried out over an 8-month design phase consisting of 86 distinct events including iterative design deliberations and social media engagement. This article describes how participatory design yielded 55 new features directly mapped to community needs and discusses relationships to user engagement as demonstrated by a steady increase in CORE member activity and followers on Twitter.

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Notes

  1. http://www.rwjf.org.

  2. http://hdexplore.calit2.net.

  3. http://quantifiedself.com.

  4. https://diyps.org, #wearenotwaiting.

  5. https://cdt.org.

  6. http://thecore.ucsd.edu/committee.

  7. https://www.primr.org.

  8. https://www.sbm.org.

  9. http://pervasivehealth.org.

  10. http://youtu.be/upy5UrKACw4.

  11. http://github.com.

  12. This analysis is confined to the initial design and development of the CORE platform between September 2015 and June 2016, and thereby excludes subsequent digital interviews and the events in early- and mid-2015. The early events are excluded because they happened before the idea of a platform had fully crystallized. The interviews are excluded because they functioned primarily to introduce subjects to the CORE platform, eliciting very little feedback that had measurable impact on platform features.

  13. http://thecore.ucsd.edu/network.

  14. https://fpf.org.

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Acknowledgements

This research was supported by the Robert Wood Johnson Foundation (Title: Connected and Open Research Ethics (CORE), Principal Investigator: Nebeker, #72876, 2015-2017) and the UC San Diego Chancellor’s Interdisciplinary Collaboratory (Co-PIs: Nebeker, Weibel and Bloss). We thank the IRB community (members, analysts) and researchers who participated in interviews and working groups to guide the design of the CORE platform features. Human subjects protection statement: The research study was certified as Exempt (45 CFR 46.101) by the UC San Diego Human Research Protections Program.

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Authors and Affiliations

  1. School for the Future of Innovation in Society, Arizona State University, PO Box 875603, Tempe, AZ, 85287-5603, USA

    John Harlow

  2. Department of Computer Science and Engineering, University of California San Diego, 9500 Gilman Dr #0404, La Jolla, CA, 92093, USA

    Nadir Weibel & Vincent Chan

  3. Department of Nano Engineering, University of California San Diego, 9500 Gilman Dr #0448, La Jolla, CA, 92093, USA

    Rasheed Al Kotob

  4. Department of Family Medicine and Public Health, University of California San Diego, 9500 Gilman Dr #0811, La Jolla, CA, 92093, USA

    Cinnamon Bloss, Michelle Takemoto & Camille Nebeker

  5. Office of Regulatory Compliance, University of California San Diego, 9500 Gilman Dr, La Jolla, CA, 92093, USA

    Rubi Linares-Orozco

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  1. John Harlow
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Correspondence to Camille Nebeker.

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Harlow, J., Weibel, N., Al Kotob, R. et al. Using Participatory Design to Inform the Connected and Open Research Ethics (CORE) Commons. Sci Eng Ethics 26, 183–203 (2020). https://doi.org/10.1007/s11948-019-00086-3

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